It ain’t over yet . . . but we are not giving up either.
Tag: trials
Spacey but upright
There’s no pretending when the story gets bizarre. I mean who could make this stuff up?
As the grace of the Lord has blessed, I am not bedridden thus far in the ramp up of treatment for a serious protozoal infection. Just headaches, increased convulsive episodes at night or morning, achiness, and fits-n-starts of my ability to function. While this is certainly awful, I was sick like this every day for the middle years of these 4.5 years of illness so I am kind of familiar with it. This time we can call it a “herxheimer” (die-off) reaction and temporary! I am thinking that I have benefitted from a pretty comprehensive protocol that has finally come together:
- Ongoing IV Rocephin and fluids via home infusions 3x per week for the treatment of chronic Lyme disease, per my Lyme Literate Medical Doctor (LLMD).
- Weekly injections of a compounded B-vitamin and prescribed nutritional suspension.
- Weekly injections of a bio-homeopathic treatment for a newly diagnosed autoimmune disease (to start in 2 days).
- Additional IV fluids now pending to combat dehydration and the effects of the anti-fungal protocol.
- Supplements to improve calcium trafficking as prescribed by my naturopath and genetic coach.
- Pharmaceutical grade supplements including an iodine protocol.
- A switch from filtered water to non-fluoridated, purified bottled water.
- Anti-fungal and biofilm busting treatment of protomyxzoa rheumatica (formerly known as FL 1953).
- Continued mold/sugar/sweetener/dairy/gluten-free, low oxalate and glutamate diet.
- Mineral baths and celtic sea salt supplementation.
- Detoxification via far-infrared sauna, nutritional binding compounds, and periodic colon hydrotherapy.
- A fabulous support system.
- Rest. Gardening when possible. Rest.
Unfortunately the bills are piling up as Steve and I go along. At some point we will need to decide how comprehensive of a plan is really needed long term due to the significant expense when insurance covers virtually nothing. For now all I can say is that I continue to move in a direction of recovery and we will figure out the rest as the Lord leads. Our prayers, your prayers are being answered. Thank you for praying. Praise the Lord!
Thank you Jesus for the hope we have in you and that I can see in my life. And please bless my faithful husband, Steve! Lord willing, I am going to get well! :JJ
Psalm 20:7 (NIV)
7 Some trust in chariots and some in horses,
but we trust in the name of the Lord our God.
When the hospital comes home
We all need our spaces, our places of retreat. Is it that corner where you curl up with a favorite magazine or book? Maybe there’s an oasis in the backyard, coffee shop, or park down the way that brings a bit of renewal sometime during the week? Perhaps in a busy household a mother of small children finds solace in the bathroom behind a closed door when sitting for a spell? During a stressful transition in my life I would drive to downtown Chicago on a Sunday just to “see water” along Lake Shore Drive. Yes, those moments are precious and necessary for sure.
For those with a special love to share one’s life, the hours alone together can bring refreshment in a whole new way. Take a moment to enjoy the words of Christopher Marlowe who invites his lover to come hither to a far away place . . .
Ahhh, the delight of romance! Is there any greater pleasure in life? Well maybe yet perhaps we can agree that there are very few? 😉
During these years of serious illness, my refuge is largely our home. For now what was once our retreat for romance and the stressors of life has been transformed into a place for a different kind of healing. Indeed we have created a safe haven from noxious exposures that can make me quite ill elsewhere in the world. I have become increasingly grateful for the work I had done a few years ago to decorate our dwelling place in pleasing colors with a lovely landscape to view out each and every window. Little did I know when we were settling in here that I would spend most of the past 4 1/2 years housebound. Little did I know that right when I started to get a little better, the comfort I found at home was about to drastically change. I really don’t like it. See what you think.
Three days per week a nurse comes dressed in medical garb to administer IV infusions. Our living room morphs into a hospital outpatient clinic for nearly 3 hours with linens draped over the furniture to protect me, to protect her. Packages arrive via Fed Ex at least one morning per week with bags of drugs on ice, medical supplies, and no presents, no card from mom. The pup with the big brown eyes is sequestered in a back bedroom lest her presence or fur flying through the air risk breaking the sterile field needed to access the power port in my chest wall. She whines and yelps for a time then drifts off to slumber as the drip, drip, drip of the IV bag empties into my body. Gratefully my nurse is very skilled and unassuming. She has the perfect temperament for all this stuff too. I just wish we were out shopping instead, ya know what I mean?
I have tried very hard to pack everything up afterwards and in between home care visits. The IV pole goes behind a door in a spare bedroom and the supplies fill a couple of bins and boxes in our office. The laundry quickly goes into the washer after Michelle leaves to diminish the fragrance of her favorite laundry soap that lingers no matter how hard we try to avoid it. Her shoe covers and all the used medical supplies get tossed into our makeshift trash bin and sharps containers. Within the hour after my “visit” ends there is no trace of the intrusion that these treatments bring to our private spaces (except for the wooden sauna that rests where an entertainment center once was, that is!).
Oh well. Thereafter with a foggy fatigue and soreness above my breast (from accessing and deaccessing the port each time) I make my way to bed for a very long nap. The seizure attacks are coming down giving way to a time of rest. At least I can retreat with a little more peace to the one place that remains undisturbed!
Perhaps one day I will find an internal space that refreshes when those around me can’t quite get it done. Oh wait, yes, there it is in the shelter of the wings of my Savior, Jesus Christ. He protects me and refreshes me from the trials, the troubles all around. With Him I can face another day with renewed strength and courage. You are my resting place, my hiding place, my refuge, my shield, my home. Sigh. This is good. This is really good, thank you my Lord Jesus. With you I am truly home no matter where I am. JJ
Psalm 142:5 (NIV)
5 I cry to you, Lord;
I say, “You are my refuge,
my portion in the land of the living.”
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The glove on the sidewalk
In Christ there are no “coincidences,” just Divine touchstones: those events orchestrated by the Lord for our good, for His glory. Sometimes we get to see His hand and sometimes we don’t. And other times things look too dark to come from our loving, sovereign, holy Father. These can all be quite mysterious this side of heaven, eh? Less so for me these days. My faith has grown to trust the Lord in all things (even the ones I don’t understand). Allow me to elaborate from my world of late.
I was walking into a medical appointment today and saw a glove lying on the sidewalk next to an adjacent garage. I used a tissue to pick it up since it looked soiled then I noted that it looked quite familiar. Yes, it was the glove I had “temporarily misplaced” last week! But how could it have remained here in this sort of prominent place unnoticed for seven whole days? Who knows? Chances are that I dropped it off my lap onto the blacktop when I exited my vehicle and it simply blew over to the sidewalk inch by inch until it’s black silhouette was easier to see against the lighter-colored cement. The staff person in the office helped me figure it out. I was dumbfounded!
Similarly, I have found little God-moments in the arduous process of transitioning from IV infusions at an outpatient clinic to my home. When you are forced into a private-pay healthcare service there is no one to assist you with navigating the 18 agencies, 6 pharmacy/supply companies, coordination of care, financial arrangements, medical orders, and “GO” button to make it all happen within a week of making the decision to do all of this. Today was treatment day number 2! Whew and thank you Lord! I have been taking more naps since it all came together probably due to the stress of it all more than anything else. There is still more to do but hey, no worries. I’m on it!
The research the Lord empowered me to do has become another blessing. First, the pharmacy I initially chose did not have the Safe Set Huber needle that would work better than what I had been sent to access my power port. My nurse was able to quickly contact another provider on my list to have the one pictured above and some other supplies sent to my home in time for treatment #3. No problemmo, the pharmacist essentially personally texted me from her home late Friday afternoon. Now that’s service!
In another example, it looked like renting 2 infusion pumps would add a lot of expense and complexity to the home care until a “mistake” happened during one of my last treatments at the outpatient clinic. The lab mixed the reconstituted antibiotic with the 500 cc of normal saline instead of dispensing them separately. This would change the dosing that we had landed on to prevent seizure attacks during the hour-long infusions. As it turns out, I tolerated the combined treatments just fine. So there would be no need for the rental of 2 pumps, no extra expense, and not even a need for expensive, pre-filled “ball” or elastomeric pumps. I ordered an IV pole ($20) and the meds pre-mixed into the bag of fluids instead. Cool beans. But all this still does not mean that I want to become a nurse ya know!
The Lord is in the details of our lives, Gentle Reader. He knows them, He sees them, He cares about them, He grieves them, He loves over them and us too. Just when we think that God is nowhere to be found, we need to look a little more closely at the small stuff. We need to move the space from “God is nowhere” to “God is now here.” He never leaves us or forsakes us (Hebrews 13:5, Deuteronomy 31:6) even in the midst of trials. The trials may be the very place when we may see Him the best. Take a look this week and be sure to tell me about it, k? JJ
A missed opportunity to minister
James 1:2-8 (NIV)
2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. 5 If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. 6 But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.
Perhaps it is a weakness in my character that requires refinement? To witness the love of Christ to others in our times of trial serves as both a powerful witness for Christ and perfector of our own faith. Heck, with the amount of suffering I have endured, I don’t want any of it to be wasted. Or repeated! So today I wonder if it is possible that I have missed one particular situation of opportunity: the Emergency Room. Finally my broken heart has calmed down enough to consider the possibility . . .
Ten times I have landed in the ER in the past 4 1/2 years. The first time was at the beginning of this illness with the viral hepatitis that started it all. The next nine trips were all for wretched, continual seizure attacks that would not stop. Most times the ER Docs could get them and the pain that accompanied them to stop with a combination of fluids and some kind of medication. Often the medication made me worse. Usually I would walk out of there about 5 hours later as a beaten puppy with an exhausted husband faithfully at my side. And sometimes I even got a break in the convulsive episodes for some of the subsequent 24 hours. This became less true with each subsequent visit.
Twice during my severe distress, barely able to punch out a few words when having difficulty breathing and my “brain on fire,” I have sworn at the person who I thought was not helping me. Not cool. Even a person with Tourette’s Syndrome or senile dementia has some responsibility to try to find reasonable means to communicate his or her needs. My frustration got the best of me and I forgot who I belong to in Christ. I forgot Who was in charge those nights in the ER. I forgot who allowed these refining fires into my life for my highest good. I lost the image He gave me of His tears as He hung from the cross for me. I ceased to remember the gifts, the crown of glory that awaits those who are in Christ Jesus. I certainly did not remember that even these ugly things were working together for my good (Romans 8:28) even when amongst the staff at the hospital. And my witness for the One Who saved me was tarnished for sure. In my own strength, I failed to get my needs met and failed to minister. We left this past Friday night with me weeping, still seizing, and unable to walk . . .
Sure, I am human: weak, limited in strength and in power. I pray and my husband prays continuously for all aspects of this illness. I submit to the will of Christ. I could also describe for you the victories, the growth, the good things that have happened amidst the traumatic. For example, Friday night after an IV treatment for chronic Lyme disease was supposed to be for salvaging what remained of my birthday. That did not happen when I spent the evening in the emergency room. I was sick all day on Saturday and Sunday. Even so there were sweet gifts at dusk on each of those days and in the morning on Monday when I got to work in my garden again; for that I am grateful. My spirit soars out there dontcha know . . .
Here is the scripture that is convicting me on a Tuesday. See if you can follow where my heart, where my spirit has led me:
2 Corinthians 6:4-10 (NIV)
4 Rather, as servants of God we commend ourselves in every way: in great endurance; in troubles, hardships and distresses; 5 in beatings, imprisonments and riots; in hard work, sleepless nights and hunger; 6 in purity, understanding, patience and kindness; in the Holy Spirit and in sincere love; 7 in truthful speech and in the power of God; with weapons of righteousness in the right hand and in the left; 8 through glory and dishonor, bad report and good report; genuine, yet regarded as impostors; 9 known, yet regarded as unknown; dying, and yet we live on; beaten, and yet not killed; 10 sorrowful, yet always rejoicing; poor, yet making many rich; having nothing, and yet possessing everything.
Such is the opportunity for ministry of the Gospel of Jesus Christ for those who suffer. It’s not all about us. My Lord, help me in your grace to use the witness of Your own life and the apostle Paul who wrote these words to strengthen my own ministry in times of need for your glory. I have failed and want to do as You would have me do no matter what happens to me. Please strengthen my beloved Steve as well. Thank you for his care, love, and companionship in the best of times, the worst of times. Bless him oh please. He has been so good to me.
Jesus is for the Wounded 
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